Roman Reed Act: $5 Million Proposed for More Research into Spinal Cord Injury

Roman Reed discusses stem cell research in 2017

Legislation to provide $5 million for stem cell and other research involving spinal cord injury has been introduced in the California state legislature and is expected to be heard soon in a key committee.

Assemblyman Kevin Mullin, D-San Mateo, introduced the measure that would re-fund the Roman Reed Spinal Cord Injury Research Act. 

Mullin, chair of the Assembly Select Committee on Biotechnology,  said in a news release 

“Sadly, efforts to continue this funding stream that expired in 2011 have failed and critical research in this area has suffered. The absence of state funds has limited the programs ability to attract private investment, limiting the work being done.” 

The news release continued, 

"The Roman Reed Spinal Cord Injury Research Act was originally established in 2000 and was subsequently renewed in 2004. The program, based at the University of California Irvine has continued its work, but on a smaller scale. According to the Reeve-Irvine Research Center, the earlier allocations of approximately $15 million in state funding allowed the program to leverage over $80 million in new grants benefitting virtually all California spinal cord scientists."

The legislation is named after Roman Reed, who suffered a paralyzing spinal cord injury in 1994. He and his father, Don, have been longtime backers of the $3 billion California stem cell agency.  Roman Reed came up with the first slogan of the agency, formally known as the California Institute for Regenerative Medicine (CIRM): "Turning stem cells into cures."

A comment by Don Reed wound up as the title of CIRM's  2018 annual report: "Something better than hope." The senior Reed lobbied the legislature for several years to create the act that ultimately provided the funding for the spinal cord research.

The bill is slated to come before the Assembly Health Committee for its first hearing, perhaps as early as this month. 

Patient Advocate Roman Reed on Stem Cell Agency Record

Roman Reed on right at stem cell agency news event. Former
California Gov. Arnold Schwarzenegger is on left and Don
Reed, Roman's father is in the center.
Associated Press photo

Roman Reed, the patient advocate who came up with the motto of the California stem cell agency, was asked for a brief comment for the 10th anniversary piece today in The Sacramento Bee that was was written by David Jensen, the publisher of this blog.

Here is the text of what Reed had to say via email: 

“The California Institute of Regenerative Medicine-CIRM can summed up in three words: Beacon of Hope. 

 “California’s Proposition 71 is the support, the foundation for the research that will one day give us the cures that we so desperately need. 

 “Today, there are nearly one dozen human clinical trials supported by CIRM!  (With another 40 diseases already planned for to go to trial in the pipeline.)

 “We Need CIRM. 

 “I am honored to have helped passed CIRM, Bob Klein's vision, California prop 71. This is a legacy that we leave to the People of California and the World. 

 “CIRM Is the World's greatest hope for Medical Cures!”

Results Heralded in Asterias hESC Clinical Trial

Two prominent stem cell patient advocates are hailing as a “giant leap forward” the initial results of a clinical trial involving a human embryonic stem cell therapy for spinal cord injuries.

Their remarks came in the wake of last week's announcement by Asterias Therapeutics of Menlo Park, Ca., that the trial had cleared its first safety hurdle. Asterias picked up the trial from Geron, which began it in 2010. Asterias and its parent, BioTime of Alameda, Ca., purchased Geron's stem cell assets after Geron abandoned the trial in 2011.

Asked for comment on the Asterias announcement, Roman Reed of Fremont, Ca., who was honored for his advocacy work in 2013 by the Genetics Policy Institute, said,

“Having started this groundbreaking research with Roman's Law funding of pioneer Dr. Hans Keirstead, I am extremely excited about the possibility of a paralysis treatment.

“My goal is paralysis cure. This research brings that dream closer to fruition for all of my paralyzed brethren. Onward & Upwards!”

Then California Gov. Schwarzenegger (left) with Don Reed
(center) and Roman Reed at 2007 stem cell agency press
 conference
AP photo

His father, Don Reed, also of Fremont and whose advocacy work along with Roman's led to passage of California's Roman Reed Spinal Cord Injury Research Act, said the search for a spinal injury stem cell therapy dates back some years.

 A major moment came, the elder Reed said “with the famous paralyzed  'rats-that-walked-again'” feature on '60 Minutes,' which made Christopher Reeve say, 'Oh, to be a rat today!' Today, the dream he embodied is a giant leap closer.”

Reeve was an actor who was famous for his screen portrayal of Superman and was paralyzed as the result of a horse-riding accident. He died Oct. 10, 2004, about one month before the California voters created the state's $3 billion stem cell agency.

Roman Reed, who is a candidate for the California state Senate in next week's election, is paralyzed as the result of a football injury to his spine in 1994. He coined the California stem cell agency's motto, “Turning stem cells into cures.”

Asterias is expected to receive a $14.3 million award from the California stem cell agency on Thursday to help continue the trial.

Roman Reed is Stem Cell Person of 2012; Leigh Turner Runner-up

Roman Reed, a Fremont, Ca., patient advocate, this week was named Stem Cell Person of 2012 by the Knoepfler Stem Cell Lab at UC Davis, which cited Reed for energizing a new generation of advocacy.

Roman Reed (left) and Paul Knoepfler
Knoepfler Lab photo

UC Davis stem cell scientist Paul Knoepfler awarded Reed $1,000 from his personal funds. The ceremonial check appears to be close to four-feet long in a photo taken in Knoepfler's lab.

Knoepfler wrote on his blog that Reed made a “tremendous difference” in 2012. The researcher said,

“One of the most notable was catalyzing the TJ Atchison Spinal Cord Injury Research Act in Alabama, which provides $400,000/year in funding for research. Of course, TJ and many others who helped make this possible also deserve great credit and have my admiration, but Roman provided key leadership. Here in California, Roman’s Law supported its 11th year of grants all eligible for all forms of stem cell research. Roman informs me that it funded $749,00 overall and approximately $200,000 in stem cell funding. 

“In addition, Roman in 2012 mentored and energized a whole new generation of advocacy from young, energetic leaders: TJ Atchison, Katie Sharify, Richard Lajara and Tory Minus.”

Knoepfler personally made the decision on the award, but also conducted an advisory poll that Reed won. Knoepfler wrote,

Leigh Turner
U of Minn photo

“Only 6% behind Roman was the amazing activist Ted Harada followed by Roman’s dad the remarkable Don Reed, the wonderful Judy Roberson, and the super Katie Sharify nearly all tied for third. Next after them was the relative new kid in stem cell town, Leigh Turner.”

Knoepfler named Turner, an associate professor at the Center for Bioethics at the University of Minnesota, as the official runner-up in the contest, No. 2 behind Reed. Knoepfler wrote,

“Leigh took the courageous, outside-the-box step in 2012 of contacting the FDA to investigate Celltex when he perceived patients could be at risk. As “thanks” for his action, he was put under enormous pressure and there was talk of possible litigation against him. Pressure was applied to his employer, the University of Minnesota. We’ll never know for sure, but from everything that I know I believe that Leigh’s actions directly led to prompt FDA action, which otherwise might not have happened at all or until much later. In my opinion, Leigh’s act of courage, helped make hundreds of patients safer in a direct way and indirectly may have set a higher standard for the field of stem cell treatments.”